Studying Children's Experiences in Interactions With Clinicians: Identifying Methods Fit for Purpose.

Increased emphasis on the child's voice and point of view in care and treatment has led to an expansion in the development of methods to access and identify their perspectives. Drawing on our experiences in a study of children with leukemia in hospital, this article explains the challenges and opportunities that arise in the use of five commonly used methods in a study of hospitalized children's experiences with health care professionals, including the "Draw and Write" technique, a sticker activity, a paper-person exercise, informal interviews, and participant observation. Each of these methods was examined with regard to ease of use, data generation, and utility of data for accessing children's perspectives and development of initial clinical guidance.

Decision-making criteria among European patients: exploring patient preferences for primary care services.

BACKGROUND: Health economics preference-based techniques, such as discrete choice experiments (DCEs), are often used to inform public health policy on patients' priorities when choosing health care. Although there is general evidence about patients' satisfaction with general-practice (GP) care in Europe, to our knowledge no comparisons are available that measure patients' preferences in different European countries, and use patients' priorities to propose policy changes. METHODS: A DCE was designed and used to capture patients' preferences for GP care in Germany, England and Slovenia. In the three countries, 841 eligible patients were identified across nine GP practices. The DCE questions compared multiple health-care practices (including their 'current GP practice'), described by the following attributes: 'information' received from the GP, 'booking time', 'waiting time' in the GP practice, 'listened to', as well as being able to receive the 'best care' available for their condition. Results were compared across countries looking at the attributes' importance and rankings, patients' willingness-to-wait for unit changes to the attributes' levels and changes in policy. RESULTS: A total of 692 respondents (75% response rate) returned questionnaires suitable for analysis. In England and Slovenia, patients were satisfied with their 'current practice', but they valued changes to alternative practices. All attributes influenced decision-making, and 'best care' or 'information' were more valued than others. In Germany, almost all respondents constantly preferred their 'current practice', and other factors did not change their preference. CONCLUSION: European patients have strong preference for their 'status quo', but alternative GP practices could compensate for it and offer more valued care.

Workplace-based knowledge exchange programmes between academics, policy-makers and providers of healthcare: a qualitative study.

BACKGROUND: Workplace-based knowledge exchange programmes (WKEPs), such as job shadowing or secondments, offer potential for health and care providers, academics, and policy-makers to foster partnerships, develop local solutions and overcome key differences in practices. Yet opportunities for exchange can be hard to find and are poorly reported in the literature. OBJECTIVES: To understand the views of providers, academics and policy-makers regarding WKEPs, in particular, their motivations to participate in such exchanges and the perceived barriers and facilitators to participation. METHODS: A qualitative study involving semistructured interviews with 20 healthcare providers, academics and policy-makers in England. Rapid data collection and analysis techniques were employed. Interviews formed part of a wider scoping study that mapped the characteristics and existing literature related to WKEPs. RESULTS: Interviewees reported being motivated to develop, sponsor and/or participate in WKEPs with a clear purpose and defined outcomes that could demonstrate the value of the time out of work to their organisations. Perceived barriers included competitive application processes for national fellowships, a lack of knowing how to identify with whom to undertake an exchange (varying 'tribes'), and the burdens of time, costs and administration regarding arranging exchanges. WKEPs were reported to work best where there was a perceived sense of shared purpose, long-standing relationship and trust between organisations. Facilitators included existing confidentiality agreements and/or shared professional standards, as well as funding. CONCLUSION: WKEPs were reported to be valuable experiences but required significant organisational buy-in and cooperation to arrange and sustain. To benefit emerging partnerships, such as the new integrated care systems in England, more outcomes evaluations of existing WKEPs are needed, and research focused on overcoming barriers to participation, such as time and costs.

Investigating innovations in outpatient services: a mixed-methods rapid evaluation.

Background: Within outpatient services, a broad range of innovations are being pursued to better manage care and reduce unnecessary appointments. One of the least-studied innovations is Patient-Initiated Follow-Up, which allows patients to book appointments if and when they need them, rather than follow a standard schedule. Objectives: To use routine national hospital data to identify innovations in outpatient services implemented, in recent years, within the National Health Service in England. To carry out a rapid mixed-methods evaluation of the implementation and impact of Patient-Initiated Follow-Up. Methods: The project was carried out in four sequential workstreams: (1) a rapid scoping review of outpatient innovations; (2) the application of indicator saturation methodology for scanning national patient-level data to identify potentially successful local interventions; (3) interviews with hospitals identified in workstream 2; and (4) a rapid mixed-methods evaluation of Patient-Initiated Follow-Up. The evaluation of Patient-Initiated Follow-Up comprised an evidence review, interviews with 36 clinical and operational staff at 5 National Health Service acute trusts, a workshop with staff from 13 National Health Service acute trusts, interviews with four patients, analysis of national and local data, and development of an evaluation guide. Results: Using indicator saturation, we identified nine services with notable changes in follow-up to first attendance ratios. Of three sites interviewed, two queried the data findings and one attributed the change to a clinical assessment service. Models of Patient-Initiated Follow-Up varied widely between hospital and clinical specialty, with a significant degree of variation in the approach to patient selection, patient monitoring and discharge. The success of implementation was dependent on several factors, for example, clinical condition, staff capacity and information technology systems. From the analysis of national data, we found evidence of an association between greater use of Patient-Initiated Follow-Up and a lower frequency of outpatient attendance within 15 out of 29 specialties and higher frequency of outpatient attendance within 7 specialties. Four specialties had less frequent emergency department visits associated with increasing Patient-Initiated Follow-Up rates. Patient-Initiated Follow-Up was viewed by staff and the few patients we interviewed as a positive intervention, although there was varied impact on individual staff roles and workload. It is important that sites and services undertake their own evaluations of Patient-Initiated Follow-Up. To this end we have developed an evaluation guide to support trusts with data collection and methods. Limitations: The Patient-Initiated Follow-Up evaluation was affected by a lack of patient-level data showing who is on a Patient-Initiated Follow-Up pathway. Engagement with local services was also challenging, given the pressures facing sites and staff. Patient recruitment was low, which affected the ability to understand experiences of patients directly. Conclusions: The study provides useful insights into the evolving national outpatient transformation policy and for local practice. Patient-Initiated Follow-Up is often perceived as a positive intervention for staff and patients, but the impact on individual outcomes, health inequalities, wider patient experience, workload and capacity is still uncertain. Future research: Further research should include patient-level analysis to determine clinical outcomes for individual patients on Patient-Initiated Follow-Up and health inequalities, and more extensive investigation of patient experiences. Study registration: This study is registered with the Research Registry (UIN: researchregistry8864). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 16/138/17) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 38. See the NIHR Funding and Awards website for further award information.

When someone visits hospital for an operation or an ongoing condition, they are given follow-up appointments at clinics, often after 6 months. The National Health Service thinks that many of these appointments are not necessary because they are not useful to patients. Also, outside fixed appointments, patients are not always being seen when they are most in need. Hospitals have been testing new ways to improve services. We looked at hospital data and discussed interesting findings with hospitals themselves to see if we could find approaches that worked. We then looked at one new approach called Patient-Initiated Follow-Up. Patients using Patient-Initiated Follow-Up can book appointments when they are needed, rather than at a pre-planned time. We explored how Patient-Initiated Follow-Up was being used in hospitals, what effect it was having and what patients and National Health Service staff thought about it. We studied hospital data and interviewed patients and National Health Service staff. We found that Patient-Initiated Follow-Up works differently depending on the hospital and the patient's condition. Patient-Initiated Follow-Up is most frequently used for patients needing short-term follow-up, such as after an operation. It is also starting to be used for patients with long-term chronic conditions. National Health Service staff think that Patient-Initiated Follow-Up can benefit patients, although some may find it easier to use than others. Patients appear to like Patient-Initiated Follow-Up, but some still prefer to let the hospital schedule appointments. From data it appears that for some conditions, where more patients use Patient-Initiated Follow-Up, fewer follow-up visits are required. For a few conditions, there is evidence of fewer emergency department visits, but the overall impact is small. We interviewed staff from a small number of hospitals and four patients, so what we found may not apply across the National Health Service. We also developed a guide to help hospitals evaluate the success of their own Patient-Initiated Follow-Up services.

Practical approaches to seeking assent from children.

AIM: To describe and evaluate two approaches--a storyboard and a wordsearch--that the authors used with children aged four to 12 years to obtain assent. BACKGROUND: The assent process is vital in helping children to understand the elements of a research project and to make a choice of whether or not to participate. However, the methods for obtaining assent are not well documented. DATA SOURCES: Two researchers' thematic reviews of the primary researcher's field notes, taken during a study of eating problems during chemotherapy. DISCUSSION: The assent process appeared to be an enjoyable, positive experience for many children. They appeared to understand what participation entailed--that it was voluntary and that they had a choice. CONCLUSION: When using child-centred techniques, children are aware of what being in a research study will mean to them. IMPLICATIONS FOR PRACTICE: Researchers can be confident in gaining assent from children as young as five years.

Transformations in the landscape of primary health care during COVID-19: Themes from the European region.

The COVID-19 pandemic has dramatically impacted primary health care (PHC) across Europe. Since March 2020, the COVID-19 Health System Response Monitor (HSRM) has documented country-level responses using a structured template distributed to country experts. We extracted all PHC-relevant data from the HSRM and iteratively developed an analysis framework examining the models of PHC delivery employed by PHC providers in response to the pandemic, as well as the government enablers supporting these models. Despite the heterogenous PHC structures and capacities across European countries, we identified three prevalent models of PHC delivery employed: (1) multi-disciplinary primary care teams coordinating with public health to deliver the emergency response and essential services; (2) PHC providers defining and identifying vulnerable populations for medical and social outreach; and (3) PHC providers employing digital solutions for remote triage, consultation, monitoring and prescriptions to avoid unnecessary contact. These were supported by government enablers such as increasing workforce numbers, managing demand through public-facing risk communications, and prioritising pandemic response efforts linked to vulnerable populations and digital solutions. We discuss the importance of PHC systems maintaining and building on these models of PHC delivery to strengthen preparedness for future outbreaks and better respond to the contemporary health challenges.

Lessons for 'large-scale' general practice provider organisations in England from other inter-organisational healthcare collaborations.

Policymakers in England are increasingly encouraging the formation of 'large-scale' general practice provider collaborations with the expectation that this will help deliver better quality services and generate economies of scale. However, solid evidence that these expectations will be met is limited. This paper reviews evidence from other inter-organisational healthcare collaborations with similarities in their development or anticipated impact to identify lessons. Medline. SSCI, Embase and HMIC database searches identified a range of initiatives which could provide transferable evidence. Iterative searching was undertaken to identify further relevant evidence. Thematic analysis was used to identify areas to consider in the development of large-scale general practice providers. Framework analysis was used to identify challenges which may affect the ability of such providers to achieve their anticipated impact. A narrative approach was used to synthesise the evidence. Trade-offs exist in 'scaling-up' between mandated and voluntary collaboration; networks versus single organisations; small versus large collaborations; and different types of governance structures in terms of sustainability and performance. While positive impact seems plausible, evidence suggests that it is not a given that clinical outcomes or patient experience will improve, nor that cost savings will be achieved as a result of increasing organisational size. Since the impact and potential unintended consequences are not yet clear, it would be advisable for policymakers to move with caution, and be informed by ongoing evaluation.

Insights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information: A qualitative research study.

BACKGROUND: Many parents report a strong desire to take on information-giving roles, and believe they are best positioned to discuss their child's illness with their child. Healthcare professionals have a supporting role to reduce the burden on parents who feel responsible for conveying information to their child and other family members. OBJECTIVE: To examine parents' and healthcare professionals' perceptions of roles in receiving and communicating information when a child is diagnosed with and treated for acute lymphoblastic leukaemia. DESIGN, SETTING AND PARTICIPANTS: We used the principles of a grounded theory approach. This was a single site study, recruiting from a principal children's cancer treatment centre in the United Kingdom. The sample included parents of children receiving and completed treatment for acute lymphoblastic leukaemia (n = 28), and healthcare professionals (n = 34). METHODS: Methods included individual interviews, face-to-face and telephone, focus groups, and an online forum. FINDINGS: Communication 'touch points' are many over the course of a child's cancer journey. We describe often 'mismatched' communication encounters where those seeking information and those providing information have different goals. Healthcare professionals in the encounter have expertise at the outset while parents have less expertise, but this expertise grows over time and this can increase the perceptions of this 'mismatch' and create different challenges. CONCLUSIONS: Considered in the context of middle range transition theory, we might suggest that parental foreground (seeking information directly) and background (passive actors) roles are the result of differing levels of uncertainty, and depend on the situation and preferences and child and family needs that may present differently over time in different contexts. Our work contributes to the emerging consensus that communication is more than a core set of skills that healthcare professionals just need to learn: clear specifications of mutual roles, responsibilities and a shared understanding of goals is also essential.

The impact of new forms of large-scale general practice provider collaborations on England's NHS: a systematic review.

BACKGROUND: Over the past decade, collaboration between general practices in England to form new provider networks and large-scale organisations has been driven largely by grassroots action among GPs. However, it is now being increasingly advocated for by national policymakers. Expectations of what scaling up general practice in England will achieve are significant. AIM: To review the evidence of the impact of new forms of large-scale general practice provider collaborations in England. DESIGN AND SETTING: Systematic review. METHOD: Embase, MEDLINE, Health Management Information Consortium, and Social Sciences Citation Index were searched for studies reporting the impact on clinical processes and outcomes, patient experience, workforce satisfaction, or costs of new forms of provider collaborations between general practices in England. RESULTS: A total of 1782 publications were screened. Five studies met the inclusion criteria and four examined the same general practice networks, limiting generalisability. Substantial financial investment was required to establish the networks and the associated interventions that were targeted at four clinical areas. Quality improvements were achieved through standardised processes, incentives at network level, information technology-enabled performance dashboards, and local network management. The fifth study of a large-scale multisite general practice organisation showed that it may be better placed to implement safety and quality processes than conventional practices. However, unintended consequences may arise, such as perceptions of disenfranchisement among staff and reductions in continuity of care. CONCLUSION: Good-quality evidence of the impacts of scaling up general practice provider organisations in England is scarce. As more general practice collaborations emerge, evaluation of their impacts will be important to understand which work, in which settings, how, and why.

Children and young people's experiences of cancer care: a qualitative research study using participatory methods.

BACKGROUND: Little is known about whether children's cancer services actually meet children's needs, as the majority of previous research has sought the views of parents as proxies. OBJECTIVES: To explore children's and young peoples' views of cancer care and to present a conceptual model of communication and information sharing. SETTINGS: Three Principal Cancer Treatment centres in the United Kingdom. PARTICIPANTS: Thirty-eight participants at different stages of the cancer journey (e.g. on treatment, near end of treatment, up to 18 months following treatment) were grouped for data collection by age: young children (4-5 years), older children (6-12 years) and young people (13-19 years). METHODS: Data were collected concurrently over 6 months using age-appropriate, participatory-based techniques. Techniques included play and puppets, the draw and write method, interviews and an activities day. RESULTS: Some findings confirmed previously reported issues, such as, young children's inabilities to voice their preferences, and the importance of familiar environments and parental support for all ages. New findings suggested children worry about the permanence of symptoms, and older children are unhappy about their parents leading communications with health professionals. As communication and information sharing featured as an area in which children's and young people's preferences changed most dramatically, we propose a conceptual model of communication roles of patients, their parents, and health professionals to illuminate communication patterns. The model suggests children (aged 4-12 years) reside in the background of information sharing with health professionals until they gain autonomy as young people (around age 13). They then move into the foreground, and their parents transition into a supportive background role. Reviewing this model may help younger children realise their abilities to voice their preferences and older children to move into the foreground. Parents and professionals, in turn, can learn to develop in their supportive background roles. We encourage further testing of the model to define roles within relevant contexts. CONCLUSIONS: Overall, this study offers a perspective on the needs and preferences of children and young people receiving cancer care. Differences across ages were more striking with reference to preferences for communication. These differences are highly relevant to the way we communicate information to children and young people.

Can people afford to pay for health care? New evidence on financial protection in the United Kingdom

Financial protection is stronger in the United Kingdom than in many other European Union countries, reflecting relatively high levels of public spending on health; population entitlement to National Health Service (NHS) care based on residence; comprehensive service coverage; and very limited use of patient charges for services covered by the NHS. There are reasons to be concerned about access to health care and financial protection in the future. The NHS is facing exceptional financial pressure owing to public spending levels that are lower than needed, as well as cuts to social care budgets. Strategies to ration NHS care may increase the need for people to pay out of pocket. While those who can afford to do so may pay for private treatment, households already facing financial pressure may be forced to delay or forego care.The vital and effective role the NHS plays in protecting people from financial hardship when they are ill should be safeguarded by ensuring that public spending on health is adequate to meet health needs.This review is part of a series of country-based studies generating newevidence on financial protection in European health systems.

Public reporting in health and long-term care to facilitate provider choice

In the policy summary authors review the literature on the measurement and reporting of quality information to aid the public in choosing health and long-term care providers, provide insights to support future investment in public reporting systems, and summarize strategies aiming to increase the use of reporting by patients and users. It shows that widespread use of quality information has been slow to materialize across health and long-term care, despite the extensive investment in reporting systems by governments and private sector organizations. There is, however, some evidence that reporting encourages providers to address quality issues to improve their reputation in the sector. The summary synthesizes evidence from a variety of European and US-based public reporting systems to assist policy-makers, care providers and information developers in creating reports more likely to be used and valued by patients and users when choosing health or long-term care providers. It was published as part of a European Commission Seventh Framework Programme project, the European Union Cross-Border Care Collaboration (EUCBCC).